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Re: My dad is dying of ALS

Re: My dad is dying of ALS

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Posted by Meg Taylor on February 21, 2000 at 23:52:21:

In Reply to: Re: My dad is dying of ALS posted by donna on November 28, 1999 at 13:25:55:

: I quit a job of 19 years to move in with and care for my friend RJ. RJ will be 52 1 week from today. In Jan. '94,he was diagnosed with ALS after approx. 1 year of slurred speech, coughing, choking, some drooling and unsteady gait. Everyone "thought" he had had a stroke. He continued to work as an accountant for 3 years. He used a hand held speaking "computer" for his verbal communication. He probably should have stopped working sooner than he did, but he loved his job & wanted to work as long as he could. He had to start using a wheelchair and soon needed 'round the clock care; to help with dressing, medications, food via g-tube, using the remote control, moving any of his extremities... EVERYTHING.
: In November '98, he was aditted to the hospital with pneumonia. Two days later, he had respiratory arrest. It was his wish to be resuccitated. He spent about 3 months in a hospital/nursing care facility that specializes in ventilator patients. We found out that you can go home on a HOME ventilator and had been making plans to do that during his last 6-7 weeks in the hospital. Barring a few "problems" or scares at first, all is going well and he has been at home now for 9 months!!
: He does take supplements: Grape seed extra, DHEA, CoQ 10, Vit A, C, & E, and we are going to add Methylcobalamin and Selenium. Are they helping?? Who knows? Given the fact he has bulbar ALS & probably should have died 1 year OR MORE ago, something is working!
: He spends his days tracking investments on the internet, adding to his collections by buying through eBay, watching movies, and obviously battles bouts of boredom and occasional depression. DON'T GIVE UP ON YOUR DAD AND REMEMBER TO BE AS PATIENT AS YOU CAN BE, the days ahead will be trying times. God bless & good luck

My Dad was diagnosed 2.5 years ago and has never given up hope of finding a cure. He is unable to eat,speak,walk look after himself in any way and my Mum home nurses hime full time.He has oxygen, a wheelchair,a saliva sucker and a gravity feeding unit and spends all his time watching pay tv and sleeping.He also continually writes to any Doctor he can think of(we are in Australia) and each month we take him to different specialists to see if they have a cure. He is now in the last stages of this horrendous disease, and we all as a family are doing all we can for him. My Mum deserves a huge medal for all she is doing and we are trying to support her in every way we can. He has home nursing 2 days a week for 3 hours a day.Mum uses this time to do her shopping and my sister and I take it in turns to sit with him so Mum can just get out of the house.She refuses to put him into care until the last possible moment as she wants to look after him herself. We all hate seeing what he is going thru and are just trying our hardest to spend all the time with him that we can . My Dad is only 72 and up until a couple of years ago, he ran a business, played golf and had a wonderful life.He consumes(by tube) approx 4,000 calories a day and weighs approx 48 kg, and continues to lose weight each week. It is all so sad.

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